Does This Mean I Can't Have Children??

[Maisie87]

I'm only 22 and am not planning on having children in the next decade.. if ever.

But from what I've heard, pregnancy will most likely cause a full fledge relapse in POTS (especially since pregnancy alone can cause POTS..). I'm using the word "relapse" assuming I will improve over the next several years.

Do any of you know if this is true?

I'm in a wheelchair or the bed at all times.. I won't do this again.** no way

I'm not particularly worried or concerned about this, just very interested in your thoughts.. ideas.. comments?

Sincerely hope you are all having good days today.

Maisie

[ethansmom]

Having POTS can be scary and uncertain at times, but it's certainly isn't a reason to NOT have children. Of course, it's a good idea to spend some time (it can be years) gathering strength and taking care of yourself- researching and preparing- before conceiving, but by no means should you rule it out if it's something you want in your future. You are still very young and have plenty of time to decide.

I had POTS before I had children, and got pregnant by surprise at 20 years old. The unkown ws very scary, but it tuned out that the pregnancy took ALL of my symptoms away for the entire 9 months (I was homebound and bedridden prior), and after I had the baby I was still fairly well and functional with mild symptoms for years. I went on to have another great pregnancy 2 years later, and did not have severe symptoms again until 2 months ago when I became pregnant with my 3rd child. For some reason this pregnancy has triggered a huge relapse- so what this has shown me is that pregnancy is a crapshoot with POTS, and we have to be prepared to deal with it either way.

I also have Lyme disease which has not yet been treated properly, so that throws another element into the equation- but the POTS symptoms are secondary to the Lyme and I still have to be treated for the symptoms.

I just wanted to tell you not to be discouraged at this young age- take time to heal before you make such a big decision. You never know what the future holds- I have enjoyed 7 years of relative normalcy after a time I never though I would "live" again, and I keep telling myself that I will get through this difficult pregnancy and come out on the other side again someday

[Guest tearose]

Please don't feel that you won't be able to have children!

Your blood volume increases with pregnancy and you usually feel better than ever.

Also, who knows what changes and improvements may happen in your life before then too!

Keep trying to get a working treatment plan and make the best of all you are in this moment! Get that wonderful significant other in you life!

Who knows, you may choose to settle down with someone who already has children or you may adopt or you may have one set of triplets.....the possibilities are endless.

best regards,

tearose

[Maisie87]

First of all, Ethansmom, congratulations on your 3rd! I'm sorry you are having a set back, but I think you are right. From what I've learned from you all on this forum is there are ups and downs, and we just have to be prepared to deal with it either way.

I'm not really fretting over this, just interested in your thoughts on the subject. And yes you're right, I won't be

making any sort of decisions any time soon... I know I have YEARS before that

Thanks so much

Maisie

[prettyinpink]

Thankyou for the question and the responses. I've been secretly worried about this issue as well but I've been trying not to think about it.

[flop]

One friend I have with POTS who wasn't getting any better with medication was actually advised to come off all her meds and get pregnant by her consultant. I wouldn't advise pregnancy as a treatment but if you are at a time in your life when you want kids there is no reason to rule out getting pregnant. The friend did really well during the first 2 trimesters, had a rough time during the third trimester, had a beautiful baby and is now expecting again. It is very much swings and roundabouts.

I am 30 so quite a bit older than you. I would love to have kids one day and am starting to think that I had better hurry up and find myself a husband, but you have plenty of time to make the decision.

Flop

[erikainorlando]

You girls made me smile. I had my first baby at 30, second at 35. My sister had a healthy baby boy at 44 1/2!! So I know you are not fretting but you have plenty of time!! NOW I am hoping menopause will calm my symptoms.

I have done some reading and it sounds like the hormones we women have seem to play some part in autoimmune disorders....there are many smarter than I on this site and I am sure they know why...but I am looking forward to menopause and hoping this may help some (I am 46).

Erika

[JennaC]

Maisie,

I just wanted to say that I can relate to your questions! I've been through endless testing for the last 11 months, just getting a diagnosis of POTS very recently. Over the summer they were concerned I had pulmonary hypertension and I freaked out because I really want to have children someday. Reading this forum gives me hope! I'm 25 and trying to stay in my graduate program right now, so babies will be on hold for a while.

hugs,

Jenna

[bella27]

Hi Maisie,

Just wanted to say I can relate to your concerns too. I'm 25 and was watching a movie the other day about a pregnant girl and started crying because I was scared I wouldn't be able to have a baby. I am scared about not only my own POTS problem during pregnancy, but am also a bit concerned that my POTS will somehow effect the health of my unborn baby. I don't know how it would - perhaps lack of bloodflow to that area of my body?

Best,

Rachel

[janiedelite]

When I went to the autonomic center at Mayo Rochester earlier this year, one of my main questions for the neurologist was whether or not it was safe for me to conceive. The neurologist there confirmed I had POTS, probably post-viral from a mono infection in 2006, and that I had small fiber neuropathy. He said that pregnancy might make me feel worse in the first trimester because of the tendency for nausea that occurs anyway during that time. But he said I' might have less POTS problems during the second and third trimester. He said that post pregnancy, the docs would have to watch my BP carefully for swings of too low or too high during the first couple of days. Also, I have a slightly hyperadrenergic POTS presentation so he said to watch for high BP during pregnancy. But he said POTS, in itself, shouldn't be a reason for me to not have a baby.

At the time of my evaluation I was bed/wheelchair bound also. Since then, I've improved somewhat using the treatments that were recommended to me. So this was just my experience, and I assume you would have to get your specialists' advice prior to getting pregnant too.

And I'll cross my fingers with you that you will come out of your POTS slump soon.

[MomtoGiuliana]

Each situation is unique. But POTS itself is not a reason not to have your own children. I think you have to be prepared for disabling symptoms, either during pregnancy or post partum and ideally under the care of a high risk ob/gyn (mainly b/c you may need to take meds during pregnancy) and a specialist in autonomic dysfunction. Unfortunately for me I was undiagnosed until after my 1 pregnancy. It was very difficult late pregnancy, the first 23 weeks being very good and normal. I had no idea why I was suddenly so sick and was told and began to believe I had developed a depression/anxiety problem b/c that's what my drs told me from mid-pregnancy to the post partum period. I chose not to have a 2nd pregnancy b/c of the unknowns and b/c of the extent to which we rely on my income. Also b/c I developed high bp at the very end and had an abruption--and there is some liklihood that could occur a 2nd time too.

As I said each situation is unique and you need to weigh the risks, if any, with your dr and with your family.

[ramakentesh]

I think there was a study recently published that concluded that pregnancy did not cause a relapse in a group of POTS patients and that they actually tended to feel better during the pregnancy rather than the opposite.

[ramakentesh]

http://www.qsensei.com/content/1666wd

Outcome of pregnancy in patient with pre-existent POTS

[Maisie87]

wow this is interesting, glad I was wrong. thanks for replying

[Rachel Cox]

Hi Maisie.

I just wanted to write to you. I am a Mum, but there were times in my twenties that I doubted it would ever happen. I was told that because of my endometriosis I would need to get pregnant earlier rather than later (they told me this at 17). Well, thank goodness i didn't have "the Daddy" at that time. When eventually i found him ....some thirteen years later... I was able to have a small surgery which made it possible. When I was seventeen the advice I got was really different to what they told me at 30. Now, I know POTS and endo are entirely different but I guess what I am saying is don't underestimate the progress that can be made in the time between now and when it (may) be right for you to have kids. They might just figure out this POTS by then and be able to re-code our autonomic systems (dreams!). It might not even be an issue for you. Just hold the idea of having kids in the way all young women your age do. Keep it in your heart and nurture it with some hope every now and then. The rest of the time, focus on you and your health, on finding a partner who will be your best friend. I think it is excellent to be wondering and trying to prepare yourself for any eventuality. I just think that on this count it isn't worth worrying about it not happening. What's that saying? 99% of our fears never come true.

Thinking of you,

Rachel

[scarfgirl]

Not to entirely hijack this thread, but has anyone also thought about not having kids for fear of passing this illness on? I couldn't bear the thought of bringing a child into the world that will have to go through what I've gone through...and research seems to suggest a genetic predisposition in a lot of cases. That's what has stopped me from considering getting pregnant.

[Maisie87]

I'm glad you posted this question! and take the thread where you'd like**

I've wondered about that too.. neither of my parents had POTS and my brother and I do..

I don't know what I will do about children either.

[mvdula]

i am the only one in my family (no siblings) with POTS. mom, dad and everyone else in extended family fine. so far my kids are fine too...

[Jan]

I think the question I would have isn't whether you can have children but whether you will be able to care for THEM with POTS and whether you can deal with years of not getting a good nights sleep.

[lissy]

Its so hard for me to have POTS and children and and just speaking from my own experience I got worse after pregnancy , my experience doesn't reflect on POTS the condition in itself but I am one of the few that have been affected negatively from having children. And I love my kids, but if I would have known I was going to become nearly nonfunctional I wouldn't of had any more after the 1st.

And since I didn't get a DX until I had my last child I had no idea what was going on with me so I was not informed of any risks or inherited possibilities. Speaking to all thinking of having children I would just say go into thinking are you willing to risk a 50/50 chance you may get worse and be unable to give them the life you want them to have or to knowingly not have all the information as in *what exactly has caused your condition and is it genetic.

Lissy

[MomtoGiuliana]

KeXia--one of my fears too. Not so much now, but when I was very ill with POTS when my daughter was born I wondered--what have I done? Not only, am I going to be able to care for her? but also, what may I have passed on to her? I am not so concerned now. I do worry about her having this (my sister has since been diagnosed so I have reason to suspect genetic role), but I also know that life is very much worth living, even with POTS. There are far worse genetic conditions, of course. And I know that more is being learned and that there are treatments that are often effective for POTS.

I think again, for each of us, this is personal and unique issue to contend with.

Lissy--I am not sure you are one of the few who has been negatively affected by pregnancy and childbirth (ie POTS getting worse with successive pregnancies). I think there are a number of people who have experienced that pattern on the forum. I don't think the research is there to know what is a typical pattern. Unfortunately there is no way at this time to predict this outcome, or prevent it. I think we all do the best we can at making life choices. It is hard with such limited information. I hope you start to see improvement as time goes on. Recovery is likely for most people with POTS, so the literature states.

[Ravenau1]

Very interesting to read all the posts here!

This is something that I've been thinking about too, I am 34 and have no children. After a disastrous first marriage I am now married to a wonderful man and do occasionally think about kids. My main fear, however is that I faint. What happens if I faint while bathing or carrying a baby? I often wonder what women in this situation do.

[TypewriterGirl]

Does anyone know if there are any issues with tachycardia and risks to the baby? I also have a very minor ASD that I don't know if it will be affected. We've had to push back trying for kids since I'm not in the best way right now and kind of bummed out about it.

[lalalisa]

Hello,

I was diagnosed with POTS about 7 years ago and waited until just this year to have a child (I am 30). I am SO glad we decided to have a baby. My husband and I had waited and waited hoping that I would improve enough to have children. I had some improvements but I'm still disabled but we took this step of faith anyways. My pregnancy was smooth and we had a healthy little girl this year. I had a really hard recovery but am doing fairly well now (at least back to where I was before pregnancy). I am SO glad to be a mom - even on the days when I feel terrible I wouldn't change a thing as far as our decision.

Blessings,

Lisa